Fatigue or weakness

Having an illness like cancer can lead to excessive tiredness and fatigue. This fatigue may be from the body’s response to repairing itself from cancer, side effects of cancer treatments, or just needing time to recover emotionally from the experience of having had a serious illness. Cancer-related fatigue can be a long-term condition, and some of the people we interviewed had to manage it within their day to day lives. As Diane described, ‘it’s a result of the (breast) cancer that I just don’t have the energy I used to have’.

The extent to which fatigue affected the people we spoke to varied quite a bit. Having long term fatigue meant that some people couldn’t live the same kind of lives that they did before having had cancer. One woman who completed her colorectal cancer treatment five years ago still experiences ‘down days’ when she doesn’t have the energy to leave her house. Another woman finds the ‘sheer tiredness’ brought on by her lung cancer and chemotherapy is the worst long-term side effect of her illness and is still stopping her from attending social occasions several years after treatment. She sometimes feels guilty about the effect this change is having on her husband as they miss out on doing the things they used to.

But I think it's just the sheer tiredness and not being able to do anything, and it's so frustrating because you want to get out of bed, and it isn't as though you just want to lay there, but you just can't do it, it's just a physical impossibility because you are so weary.

And I still get very tired. Obviously I do most things in my house but I've got a very good husband who does an awful lot for me. I do get tired quite easily and I know by tea time that I've had enough, you know. I don't go out a lot on an evening or anything, you know, because I just do sort of suffer with tiredness, and I think most people who've had chemotherapy seem to think that, you know.

But on the other hand it does get a bit frustrating sometimes, you know, like I've just been ill again at New Year, you know, I've been in bed for five days, it was also my wedding anniversary so we couldn't go out or anything, you know. And I found that I've missed quite a few family engagements and family outings because of illness sort of thing, you know, being tired. And sometimes I think people do find it a bit hard to, you know, they tend to think, ‘oh, you know, she's poorly again,’ type thing, you know, I think that does come into it a bit sometimes, I don't know, maybe. I tend to feel a bit, as I say, I don't know why I always feel guilty about things, don't I? But you just feel sometimes that you're letting people down if you don't feel well enough, you know, to go out. But I do know my limitations and I know that I can't do with a lot of noise, you know, it sort of turns, makes my head go a bit funny, I can't do with a lot of people talking, I'd rather be quiet. Maybe that's because there's only two of us live together and I can't do with a lot of people around really, you know, I couldn't go to discos or anything like that, you know, where there's that sort of noise, it does my head in type thing.

And I do sometimes think to myself it's a shame for [my husband] like, you know, because we miss out on things because I'm not well enough to go or something. But he doesn't seem to mind, so he accepts it, he's wonderful.

Others found that they needed to scale back participating in sporting activities or exercise. A 65 year old man who was six years post-diagnosis of prostate cancer described how his lifestyle has changed, as he had to stop doing activities or sports which were too ‘energetic’. He felt that it was important to try to keep active, but also needed to make time to rest. Travelling abroad to visit his daughter has become difficult as any long journeys with heavy baggage are just too tiring for him.

I was talking earlier about fatigue and I think that's one of the problems that might not be seen by a lot of people as being a problem. I mentioned that I'd had to stop doing some of the more energetic activities that I was used to doing and, as I say, the pain particularly started being troublesome in my back, lower back and both hips, and I found that I was having to start thinking, well I can't do this, I can't do that, what can I do? I started taking up more sedentary hobbies, things like painting, bowls, I thought, well I like playing some sort of sport so I thought, what can I do that's not too energetic, and I thought, well bowls isn't very energetic so I'll see if I can cope with that. And fortunately I have been able to, apart from the bad pain period that I had recently where I had to even give the bowls up. But by and large I've managed to do that and I think it's important that you do keep active, that you do keep doing something, because it's very easy just to start thinking, well I've got to, you know, do less and less and less, and I think it's a good thing if you keep, as I say, keep active, even if it's not as active as you used to be. So going for walks, keeping your joints supple is important even though very often you may not feel like it it's important to keep as active as you possibly can. And you do find that you do have to rest more, so I'll perhaps do something active for half of the day now and maybe rest the other half of the day, so in that way my lifestyle again has changed in that you acknowledge that you can't do as much as you used to be able to do. Things like going away on holiday and carrying heavy luggage becomes a problem I've found. I used to go on holidays to Singapore where one of my daughters lives, I can't do that anymore because the journey is far too tiring for me. I just can't cope with it.

Some people said it was difficult to know whether tiring more easily was also due to getting older, but they noticed that they had less stamina since their cancer treatment. A 50 year old woman says, “I have to pace myself a lot,…well it’s probably because I’m getting older but I definitely don’t have the stamina or energy that I used to have before.” A woman in her early 40’s said that six years since having ovarian cancer, “when I’m tired, I just go to bed. I probably would have soldiered on and been up to all hours to do things. I don’t do that anymore.” A man in his fifties who was diagnosed with lung cancer five years ago now finds that he has to do his gardening in stages because of tiredness, so he does a small bit then has a sleep, then he does some more.

Diane is a teacher. She is married with two children. Ethnic Background: White British.

I think the long-term impact it’s had on me, and still does, is the tiredness. I get tired, but that could be that I’m just getting older but it tends to always come back to me that it’s a result of the cancer that I just don’t have the energy I used to have, because that’s what happened straight afterwards. I had the radiotherapy and it was that, I think, that drained all my energy, and I’ve never got that back for one reason or another.

When I can whiz through the house in a day doing it from top to bottom and then go shopping and visit somebody, now I would be exhausted if I did that, and then I don’t think I could do it, not to the, like I used to. But like I say, that could be my age anyway.

Feeling more fatigued than normal made it hard for those people who were still working to get through the day. Louise, who is self-employed as a tour guide, described how a lack of energy makes it difficult to motivate herself to get work done. She is still on hormonal therapy (tamoxifen and Arimidex) for her breast cancer and thinks that this is the source of her tiredness.

Louise is married, and has two sons. She works as a self-employed tourist guide. Ethnic Background: White British.

I’ve been on drugs, and still am on drugs , and these have affected me. And I think also that I’ve suffered a lot from inertia and tiredness and lack of motivation and, well, I say lack of motivation, but I have wanted to carry on as usual but it’s been difficult and I’ve felt I really have to drive myself at times.

In terms of side effects of your treatment and things, do you think that’s affecting your working life now?

It makes it harder. I’ve had to really make an effort to force myself. Sometimes when I’ve been really busy, if I’ve come home tired and I’ve got invoices to do or I’ve got guides to book or I’ve got to organise paying them, you know, I’ve got to keep up to date with my accounts, and it’s been really hard sometimes to make myself do that, and sometimes I’ve let it slide a bit more than I should have done. Yeah.

And why is that? Is it because of fatigue or, as you were saying, just sort of lack of…?

Partly fatigue and partly just a sense of just not wanting to feel under pressure, wanting to just relax. It’s, yeah, now whether it’s psychological, whether it’s the drugs that I’m still on, whether it’s a bit of both, whether it’s my age, I don’t know.

Louise was not the only person to attribute feeling fatigued to long-term effects of cancer treatments. Ann, who had leukaemia and was treated with a bone marrow transplant, described how she still gets ‘very, very tired now’ even though she is seven years post-transplant. Diane feels that the main long-term tiredness that she experiences is due to radiotherapy treatment for her breast cancer which just ‘drained all of her energy’.

As well as fatigue, some people talked about weakness or having less ‘physical strength’ as a result of surgery or radiotherapy for their cancer. One woman who was five years post-diagnosis from non-Hodgkin’s lymphoma described how she is ‘not the same person she used to be’ and has lost strength in her hands due to nerve damage from surgery. She finds it difficult not being able to lift things, and has to deal with continuing pain and numbness in her hand at night-time. A man who had non-Hodgkin’s lymphoma thirteen years ago used to work as a surveyor and feels that the biggest side-effect he has had to manage is his ‘lack of strength’.

Retired surveyor, married with 4 adult children and two adult stepchildren. Ethnic Background: White British.

The biggest side effect, I suppose, is the lack of strength. We did a lot of renovation work on the various houses that we’ve owned, and I can remember the times when my sons used to come to me and say, “Dad, can you move this for me please?” Or, “Can you pick this up?” And I’d go along and pick up a flaming great big boulder, not thinking anything about it at all, I’d just do it, it was part of the renovation. But these days I actually have to wait until my sons come down, and say “Can you lift that for me please?” I can’t do it anymore and that is frustrating. I’ve tried swimming and moving weights around but I don’t seem to get any stronger, it’s just one of the things I think I have to accept that I can’t do it, you know. I’m still breathing, what have I got to be sorry for?